Saturday, 31 December 2016

Out with the old, in with the new.

Time flies when you're having fun. It also flies when you're stressed up to the eyeballs, as I've found out this year, last New Year only feels like a couple of weeks ago, I can't believe that 365 days have flown by so quickly.

2016 has an infamous reputation for many people, and I can't think of many people who won't be pleased to see the back of it.
For me it's had its ups and downs. I haven't written as much as I'd like to have written, real life has a knack of getting in the way, I have a whole load of draft posts which are far too bitter to ever post, yet are available for me to read back in order to remember the parts which have gone wrong so I can work out how to right them again.

In the style of a school parent's evening, I will try not to dwell on the difficult parts too much. I will aim for a shit sandwich; the good, the positive plans to guide me into the new year, and wodged between them, the bad.

There have been some real high points this year.
Writing this blog has been great, some of my posts have had thousands of views, which I can't quite believe (me, writing stuff that people actually want to read!). Having a voice to vent frustrations and share some of the thoughts that keep me awake at night has been very therapeutic and a welcome boost to my self-esteem.
My diagnosis earlier this year has enabled me to learn more about myself and more about autism, it has also had the benefit of allowing PDA boy to feel a bit more positive about his diagnosis as he's not alone and we have interesting chats as we discuss how autism affects us in different settings and with different people.
We have had times where we know we have got things right, and we have some lovely family memories scattered throughout 2016, which serve as a constant reminder that, no matter how hard things can be, it is always worth battling upwards and onwards.
Although they have nothing to do with PDA, a real bright spot for me has been getting our pigs, I still look at their little chubby faces and can't quite believe that we are pig owners.

Unfortunately the low points have been many. I don't know if this is because my mental health is a little wobbly, therefore anything negative that happens knocks me back and things appear intolerable. I do have a very good track record for crawling back out of this though, I'm still here and ready for the next challenge.
School has, again, been difficult. PDA boy moved up to secondary this September, and after an apparently positive start, complete with several ignored warnings from me that all was not well, he has crumbled and spent the last few weeks at home, too anxious to contemplate going to school. Our predictions of extreme masking followed by a breakdown of ability have unfortunately been proved right.
As ever, the balance of power in these situations lies with those who have little understanding of autism, let alone PDA, and the people whose voices count in the endless meetings have no interest in learning about or supporting the individual. Reasonable adjustments are convenient to school, but are impossible for PDA boy to access at this time, and as parents, our only acceptable role in this mess is "just get him into school, ok?"
This imbalance of power extends to CAMHS, and their rigid views on autism and their complete lack of knowledge about masking.

This leaves us, as a family, feeling very vulnerable. PDA boy desperately needs support, we have ideas how this would look, but no idea if these strategies would actually work because no-one has ever tried them in a school setting, despite years of providing information in an attempt to proactively keep the boy feeling able to cope, and sharing as much information as we can. At this point in time we feel that we have failed him, or at least, the system has failed him.

So now we are at a point where we plan how to proceed. We know that if PDA boy is to remain in school he will need to be supported, so January will be a time of communicating with school and hoping that they will start to understand PDA boy and see that despite his calm outward demeanour, he is an incredibly anxious boy.

2017 will be a year of reinforcing PDA strategies and re-reading The Explosive Child.
During 2016 we slowly realised that our oldest son ticks almost every box for PDA, he scores highly on the extreme demand avoidance questionnaire, it's also looking like he has OCD and Tourette's, so for him, this will be a year of trying to help him to tolerate his siblings and help him to feel better about himself. He doesn't want to go down a route of assessment, and as he is 16 we will respect that, but will be ready to start the ball rolling if he chooses this path.
2017 may also be a year where our youngest is assessed. At 5, he is showing many of the signs that his brothers showed at this age. His first year of school, where he struggled and cried an awful lot of the time, taught him to only show a happy face, sadness and tears were punished, so we know that masking will be an issue with him too. We found with his brothers that issues became more obvious as they got older, so we are still considering whether assessment now may be a pointless exercise, living, as we do, in an area that requires stereotypical, obvious autism in order to diagnose and support.

2017 will also hopefully be a year where I start to take on more myself. I stopped work when PDA boy was born, I found juggling work with three children impossible, and in more recent years we have found that due to the complexities of life, me not working has made life much easier. No paid job could be as flexible as we would need it to be, so for the time being we accept the inevitable lack of funds, but I'm hoping that some changes this year may lead eventually to some self-employed work so I can be as flexible as I need to be.

It's with some trepidation that I approach the new year, and I will be doing my upmost to get the most out of 2017 for all the family, and hopefully move on from the more challenging times, or at least have the strength to keep us all plodding on.

Thank you to all who read this blog, it's been an interesting first year.
I wish you all a calm and peaceful 2017.